Planning your last days: difficult but important

April is Healthcare Decisions Month, and one Hallmark Health doctor suggests using the designation as an opportunity to broach a difficult but important subject – end-of-life healthcare planning.

“It’s not a pleasant topic to think about,” said Dr. Cara Chevalier, a family medicine physician with Hallmark Health. “But without that discussion, you might not end up with the kind of death you were hoping for, or the time you have in those final days was not spent how you might have wanted to spend it.”

Chevalier runs Doctors Care at Home, a program that provides medical care to homebound seniors in the area. Through her work, Chevalier has seen the importance of planning one’s final days – and how few people have done that planning.

According to a survey by The Conversation Project, an organization dedicated to facilitating discussions about advanced care, 90 percent of people say talking with loved ones about end-of-life care is important, but only 27 percent of people have actually done so.

A shift in mindset

Chevalier said the focus on end of life healthcare planning represents a shift in the medical profession. After years of significant medical innovations, healthcare workers came to view death as the enemy, an outcome that could be thwarted, she said.

“In medicine, we’ve been able to do so much that we kind of lost the forest through the trees,” she said. “Doctors have always been trained to cure people but death is not a preventable thing. Knowing that we can do something doesn’t always mean we should.”

With advanced care planning, Chevalier said medical professionals can do a lot to ensure patients have control over how they spend their final days. For some, that means doing everything possible to extend their lives. For others, that means facilitating time at home with friends and family.

Caring at home

Beginning with a Medicare wellness exam, doctors such as Chevalier are making the effort to understand what will be important to the people they’re caring for when the end draws near.

Still, Chevalier said it’s difficult to have a conversation about planning one’s final days during a doctor’s office visit that lasts 15 minutes on average. Through Doctors Care at Home visits, which last closer to 45 minutes, medical professionals have more time to broach the subject in a comfortable and familiar setting, she said.

“We have the ability to be having these discussions in a setting where we don’t have to say, ‘I’m sorry, I have to see the next patient,’” Chevalier said. “Most patients have not really thought about it. Some have, but for many it is coming a little bit out of left field.”

Because most of the 200 patients who use Doctors Care at Home are coping with health conditions or symptoms of aging that limit their mobility, Chevalier finds those patients and their families are usually more willing to consider their end of life goals. For some, the conversation is welcome.

“It is a little bit of a mindset change,” Chevalier said. “Our health is getting significantly worse, and our end may be getting closer.”

Bringing it up

Chevalier said conversations about end-of-life care should start when people are healthy, and families, individuals and doctors share responsibility for ensuring a person’s end of life wishes are discussed, planned and documented.

For families, that process begins with bringing the topic up with loved ones – something Chevalier admitted is no easy task.

“Death and dying is not an easy thing to talk about,” Chevalier said.

Resources like The Conversation Project’s online “starter kit” questionnaire help structure what Chevalier said should be a series of conversations with doctors and family members. Topics included in the starter kit range from the financial burden of medical care to where a person would like to spend his or her last days.

“It’s relatively rare that you sit down once and somebody spells out everything,” Chevalier said. “The conversations evolve. They start out simple and you progress through a series of questions about how you define quality of life and they start to get more difficult.”

Advanced healthcare planning discussions essentially revolve about patients’ goals for their last days and what matters to them as individuals, Chevalier said.

“At the root of the issue is, if you are in your final days, do you value the quality of your life or the quantity of your life?” Chevalier said. “You would think quality 100 percent, but some people want quantity.”

Put it in writing

In addition to making doctors and family members aware of a patient’s wishes, advanced care planning also involves formal documentation.

Though some choose to hire a lawyer to draw up living wills and settle powers of attorney, many of the documents that alert medical professionals about a person’s plans for end-of-life care are available for free online.

The first document people should fill out is a healthcare proxy form, Chevalier said.

“The healthcare proxy is the person you would like to make healthcare decisions for you if you were not able to make them for yourself,” Chevalier said, adding the proxy does not have to be a family member.

The healthcare proxy form requires only two witness signatures, and should be kept on file with the patient’s primary care doctor, the hospital system used most frequently by the patient, the healthcare proxy and the patient, Chevalier said.

Elderly patients or people with serious diagnoses can also download and fill out a Medical Orders for Life Sustaining Treatment (MOLST) form, which must be signed by a medical professional.

The MOLST form deals with specific medical interventions that are used to keep seriously ill people alive, including artificial nutrition and hydration, dialysis, resuscitation and whether or not a person would like to be transferred to a hospital if found unconscious.

When filled out, MOLST forms should be kept in visible locations so EMTs will see them if called to a person’s home. Common locations include the refrigerator and the back of the front door, Chevalier said.

Asking these difficult questions can make the traumatic experience of losing a loved one easier, Chevalier said, because families and doctors can be confident the patient’s last wishes were fulfilled.

“Even if you can’t cure someone,” Chevalier said, “you can still care for them.”